A version of this article first appeared in the Washington Post. Republished with permission.
In a calendar full of months dedicated to specific illnesses, September is particularly painful. This is the month focused on childhood cancer awareness. You’ll see gold everywhere — gold ribbons, gold banners, gold-themed profile photos on social media, all in the name of awareness and remembrance for children battling cancer. And kids, like my Ana, who lost that fight.
Each year in the United States, roughly 16,000 children from birth to age 19 will be diagnosed with cancer and 1,780 of them will die of it.
Ana died on March 22, 2017, at age 15, of a rare type of cancerous tumor.
Yet she’s always with me, always at the periphery of every thought, every moment. I still say good night to her. I talk to her in the morning as I replenish the bird feeders. It’s no burden for me to remember Ana, but keeping her memory alive in the minds and hearts of other people? I’m finding this a challenge, particularly as time passes.
In the beginning, it wasn’t difficult because everyone was grieving. Ana was in the thoughts and hearts of an entire community of people who had been with us, cheering us on and rooting for Ana, for five years. But life, as they say, goes on.
Except when it doesn’t.
An average of about 17 percent of children die within five years of a cancer diagnosis. For those who survive beyond five years, 18 percent will die within 30 years.
Ana lived for four years and six months after her initial diagnosis in September 2012.
We didn’t have a funeral. We couldn’t bear to bury her. Instead, we had her body cremated. We picked up her ashes from the funeral home two weeks later. They were in a black, unmarked cardboard box, which I slipped onto a shelf as if it was an oddly shaped book and not the remains of my daughter.
I drive by that funeral home several times a week. At first, it was impossible to suppress the image that rose up, unbidden, whenever I passed it — Ana, laid out on a metal gurney, a blanket pulled up to her chest. Her skin was the color of porcelain and she was so impossibly cold. Except for these details, she could’ve been sleeping.
She held two identical stuffed alligators under each arm — she’d called them “Choobie,” and she’d loved them her entire life. They were cremated with her.
Two months after she died, we had a memorial celebration on what would’ve been her 16th birthday. We gathered at the small private school in Woodstock, N.Y., that had embraced Ana — a place she loved and that loved her.
By then we’d moved her ashes to an urn made by a local potter who painted a hummingbird on the front beneath Ana’s name. The hummingbird was inspired by a tattoo design that Ana liked. She’d hoped to get the tattoo before she died, but she was too young and far too sick. The potter had combined the hummingbird with one of Ana’s drawings — a blue flower with periwinkle petals.
I’m reminded of the tattoo Ana never got every day when I walk past her urn to sit down at my desk.
You see, my office was Ana’s bedroom. My work area is spread across one wall, but the rest of the room still belongs to her.
Behind me are Ana’s shelves, filled with items she loved — candles, trinkets and bowls she’d made in pottery class. The urn occupies a corner of those shelves.
We glued a chunk of celestite to the lid — it was Ana’s favorite stone. Four paper cranes adorn this small altar — one for each member of our immediate family. The last crane Ana ever folded is the orange one.
On average, a child loses 70 potential life years when they die of cancer, compared with 15 potential life years for adults.
Near our home in New York’s mid-Hudson Valley, there are several places where we’ve honored Ana’s memory. They are our attempt to let people know that she lived. She was real. A plaque with her name on it is secured to a slab of bluestone in a local park.
We used to take Ana and her younger sister to this park when they were little. Ana loved to catch frogs in the park’s tiny pond. She was a master frog catcher, but she was always gentle. She’d catch them, cup them in her hands for a minute or two, then set them free. Ana had called the park “The Frog Pond” and the name stuck. She loved going there even as a teenager.
After we installed the plaque, we scattered some of her ashes in the frog pond.
A yellow magnolia tree was planted near the entrance to the small private school that Ana attended from first through eighth grades. At its base sits a handmade steppingstone that reads, “Ana’s Tree.”
About 30 miles away in Woodstock, a circular gazebo, made from rough-cut logs and bench swings, surrounds another tree at the school where Ana attended ninth and 10th grade. This one is a maple. We planted the tree in Ana’s memory during her memorial service two years ago.
Ana’s former classmates completed the gazebo and hung their own plaque in her honor last year. The gazebo is a welcome respite for students, teachers and parents who can sit and contemplate the beautiful school grounds that Ana loved.
“The space is never empty,” a teacher told me during my last visit.
It never feels like enough — these tokens of our love for Ana — but at least it’s something.
As many as 20 percent of mothers and 35 percent of fathers reported symptoms of post-traumatic stress disorder (PTSD) five years after their child’s death.
My friend Jodi made me a quilt from some of Ana’s favorite clothes. It took me months to do more than drape it over a chair. I could barely look at it, much less touch it.
I have every single item of clothing memorized — the owl pajamas, the sherbet-colored rainbow sweater, the Buffy T-shirt that she’d worn until it had practically disintegrated. I would give anything to wash and fold Ana’s clothes again, literally anything.
But all I have is this quilt. These days, I drape it over my legs and run my hands over each square of fabric. It helps with the remembering.
I remember Ana by writing about her. I tell and retell her story — not just the story of how she died, but the story of who she was, of how she lived. I remember her by saying her name. I’ll keep saying her name until I can no longer speak.
I light candles for her, watch her favorite TV shows and turn my Facebook page gold in September. I am learning, slowly, to find joy in her memory because that’s all I can do. It’s all I have left.
Only four drugs have been approved for first-instance use in treating childhood cancer since 1980. And annually, from 2007 through 2016, less than 4 percent of the National Cancer Institute’s budget was allocated to fund pediatric cancer research.
The truth is, there’s no single way to remember a dead child. Every family copes with this loss differently. I wish there weren’t so many of us out here — grieflings, bereaved parents, the tribe of “after.” I had no idea how many of us existed until I became one of them. Now I know at least 10 parents who have lost a child to cancer.
My hope is that some day no family will lose a child from cancer and that gold of September will simply represent the autumn harvest and the turning leaves, not the suffering of a child with cancer.